This is very interesting, read this carefully, especially the conclusion.
I've pasted it below...
In conclusion: it was confirmed that supplementation with DHA, in addition to LO and treatment with a cholesterol lowering drug, atorvastatin, increased DHA levels in plasma and RBC of the AMN patient. These increased DHA levels may exert a neuro-protective effect by a negative feedback mechanism, leading to an increase in EPA. In turn, EPA and DHA are incorporated into inflammatory cell phospholipids, partly at the expense of AA, exerting an anti-inflammatory effect [20]. Sing and Pujol also suggested that treatment strategies should be developed for the inflammatory, metabolic and oxidative stress disease aspects of X-ALD [21]. Supplementation with DHA, is therefore strongly recommended in patients with X-ALD patients, due to the important role of DHA in brain development and myelination and the feedback mechanism which may cause a neuro-protective and anti-inflammatory effect.
I'm reconsidering LO, or Mustard oil at least.
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monkeybus
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I have been using DHA (fish oil) for quite a while just for mood...and I swear it helps there. I have worried that it goes against the "low fat" recommendations with ALD, so I am glad to see with this study that I am at least not doing any harm! (I know about the different "types" of fat, but still was concerned).
Mustard oil won't invalidate insurance like LO does, at least in the U.S.
What if your DHA levels are 3 x past normal limits and EPA 2 times past normal limits? My doctors think its because I cannot do the conversion BECAUSE of a X-ALD (21).
Isn't DHA and EPA part of a long chain fatty acid? Please clarify. Thank you.
Fish oil (DHA and EPA) are considered long chain fatty acids and ALD is an issue with Very Long chain fatty acids (just a different length chain which requires a different mechanism to “chop” it up which we can’t do). But the fish oil alone has been shown to affect the vlcfas in some way too. I can’t quite remember. I will have to find the study and post it. I know I am always wondering if I am doing good or doing harm by taking them and search for updates info periodically.
I was put on a mitochondrial diet about a month ago and eat a lot of coconut oil, also MCT oil as my doctor was sure it was a mitochondrial problem and at the same time did testing and included the VLCFA test which came out ALD possitive. For about a week my leg naturopathy and kidney pain, exhaustion have been worse. I am thinking it's from the coconut oil. I stopped the fish oil when my tets came back so hih on the EPA and DHA. I don't go back to my doc until next week.
Will be very interesting to find out more. My old doc seemed to think it was ok because it wasn’t a vlcfa. I tend to feel better when I take them. But only certain ones. It is a game of trial and error for each of us, isn’t it?
I just wish we could wear a patch that has all of our “stats” (blood levels of anything, nutrition level, general health) like in a video game at the push of a button in our arm or something. lol
Isnt that the truth. I have had problems since birth but only found out dx 2 days ago. I also have Ehlos Danlos syndrome so my docs have always thought it was that but things were not adding up. I have seen head of neurology Stanford but they said they thought my problems had something to do with my blood no referral to whom I should see and also they just said that if I had another stroke they would send me to the stroke center but no answes on why a female unde 50 should have a stroke in the first place. I have perfect cholestero. Lol It was my osteopath that's been the most hall and specializes in neuromuscular issues, EDS and traumatic brain so she is an expert in mitochondrial diet. I will update you as soon as I get any information from her.I believe I will be sent to a team of doctors at UCSF.
Wow! We need to chat over coffee sometime. I had aorta surgery a few years back by a surgeon who specializes in ED vascular issues. (Mine was an unrelated rare congenital anomaly) but I also have had other different (apparently unrelated) issues since birth, some similar to what you’d see in ED. I was adopted so I don’t know family history. The ALD issues technically aren’t supposed to show up until adulthood in women so I am now wondering if maybe there is a different “type” of genetic mutation or syndrome that maybe you and I might have (and maybe others out there?) that involve other conditions.
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Are carrier symptoms just "mild"
Is this progression or regression?
AMN and diet
